Update (March 1st) – I won the challenge, much to my surprise! Thank you so much to Rare Disease UK! It was great fun being involved, because I loved the theme of the campaign, and I really enjoyed seeing other people’s photos. So very well done to all involved. We can all be proud of our efforts to raise awareness during the month! 🙂
Happy Rare Disease Day! 🙂
Today is a wonderful international opportunity to raise awareness of rare diseases, conditions, disabilities, etc, to educate people and highlight the need for greater funding and research. Here in the UK, it’s led by Rare Disease UK. But there are events taking place worldwide, so there will be related organisations in many countries.
1 in 17 people have a rare disease, meaning it’s a lot more common than you might think. So even if you don’t have one yourself, chances are you know somebody who does. And if you do have a rare condition, you’re certainly not alone.
There are over 6,000 rare diseases, affecting over 300 million people worldwide (including 30 million in Europe). That’s a huge number! So this is a day for all of us unusual rarities to get together, along with anyone and everyone who supports us and the cause in any way.
This year, the theme is “Show your rare, show you care”, and everyone can get involved, regardless of whether or they you have a rare disease. So that includes patients, families, carers, medical professionals, policy makers and members of the public.
It’s a very positive campaign, giving us the chance to “rare up” and show that we’re fighters who never give in. We don’t want to be seen in a negative light, as if we’re not capable of anything, as if we’re not equal to the rest of society. We want to be treated fairly and equally, and to be given every opportunity to live the fulfilling life that, given the right support and treatments, we’re perfectly capable of having. And we also want there to be greater research into the causes and treatments of rare diseases.
Ultimately, we’re still people at the end of the day, we’re still human. We just have that extra something that makes us a bit different and unique, and that doesn’t have to be in a bad way.
There are many ways to take part. Sharing information about rare diseases is vital to spread awareness and educate people – whether it be making a blog post or a video about your own condition (as I’ve done about my aniridia and nystagmus in the past), or sharing posts that others have made about their conditions on social media. And making a donation to a charity for a rare disease is hugely helpful in funding support and research, every little bit really does help a lot (e.g. the Aniridia Network and Nystagmus Network in my case).
So if you can do at least one of those things, it will be greatly appreciated. Some people are also painting their faces as well, which is cool. But if you’re visually impaired like me or have dexterity issues, and don’t have someone to help you with it, then you’ll probably want to skip that part like I’ve done. And that’s fine – as long as you’re raising awareness in some way, whatever it may be, then that’s what counts.
For my part this year, I’ve got involved with the Instagram Challenge that Rare Disease UK put together. Supporters have been encouraged to post a picture every day during February, based on a set list of themes. So that’s what I’ve been doing on my Instagram, which you’ll have noticed if you follow me there.
But I thought I would make a blog post to showcase all the images and their captions as well, because not everyone uses Instagram, it’s useful to keep it all together in one place, and it’s a nice way to mark Rare Disease Day here on my blog.
Combining my posts in this way means you have a nice summary of my conditions, how they affect me, how I work around them, and how I live my life in general. And you get to learn a bit about my childhood as well as some of my more recent activities. I’ve been able to use a mixture of images to fit the various themes, and even a few little video clips, and I think it’s come out well.
So here we go, this is my Rare Disease Photo Challenge. You can click on the heading link for each day to see the original post on Instagram itself. I hope you enjoy it!
A big hello for the month leading up to Rare Disease Day on Feb 28th! I’ll be aiming to post once a day for the Rare Disease UK Instagram challenge, to show that having the rare eye conditions aniridia & nystagmus doesn’t stop me leading a happy, eventful and successful life. Cheers! The photo was taken during a social with South East London Vision this evening, at the Doggett’s Coat and Badge pub.
Mornin’ all. The perfect morning beverage for me isn’t tea or coffee, as I don’t drink either. So a nice glass of orange sets me up nicely for what is hopefully an equally bright and colourful day ahead.
It was cold and wet outside, so I’ve had a productive day indoors instead, including filming a new video for my Youtube channel, and finishing off a blog post to go with it. I regularly post about my adventures out and about in London, and my experiences as a disabled person in general. It’s led to (and is still giving me) many wonderful opportunities that I would never have had otherwise. My attempts at blogging and vlogging have been really worth the effort, for the amazing friends and experiences that have resulted from it already.
Here I am at Hyde Park Corner this afternoon, in front of the gateway to the park – the Hyde Park Screen as it’s called – with its 3 stone archways separated by many stone columns. I was passing this before joining a group for an interesting art tour of Apsley House next to it, where the Duke of Wellington lived. Just because I’m visually impaired, it doesn’t mean I can’t see, understand, appreciate and enjoy art and other exhibits in museums and galleries. Far from it, I love exploring those places. And now I live in London I’m really spoilt for choice of things to see. So I’ll always love going out and about here, I could never get bored of the place.
Right now, it feels like a Monday muffin is a good incentive to get through the first of a few very chilly days ahead. If I can say I’ve had a productive day to start the week, then I’ll feel I’ve earned this triple chocolate delight with all the chocolate chunks it contains. Not that I won’t gobble it down anyway of course, but still, it’s nice to feel it’s well deserved! Anyone else want one?
I always had great admiration for my father. He had a rare disease too – Behçet’s Disease – which affected his eyesight and blood circulation more and more as the years went on. But he never let it get in the way. He had a happy, fulfilled life, a great sense of humour, and was a wonderful husband and parent, giving me all the encouragement, support and love that any child could want. It’s hard to believe it’s 7 years already since his untimely passing at the age of just 65, so he never got to enjoy his well-earned retirement.
His early departure was the reason Mum and I moved to London, as we had an opportunity available to do so and make a fresh start. It took a long time to sort everything out, but we finally relocated just over a year ago, and are very glad we did. Dad came with us in spirit though, and I think he would be very happy for us. I still miss him very much and always will, but I have many fond memories that I’ll treasure forever, and he’ll always be in my heart and mind. I love you Dad.
My evenings have become very varied since moving to London, which is fantastic. Sometimes I’ll be out and about, going to social events, game nights, the theatre, etc, either while meeting good friends or independently by myself. Sometimes I’ll be doing stuff for my blog and social media. And sometimes I just like to flop down in front of the television or watch DVDs. Like tonight, where I’m catching up with a Best Of edition of Dara Ó Briain’s Go 8 Bit before the new series starts next week. It’s a fun game show with celebrities playing video games – which themselves were a big part of my evening routine when I was younger, so this show brings back happy memories of my favourite games. My dodgy eyesight never stopped me playing those! Still wouldn’t now.
Having aniridia means I don’t have an iris in my eye, which would normally adjust the size of the pupil to regulate how much light enters my eye. Without that, one major consequence is that I’m overly sensitive to glare and bright light. It’s worst in the sunshine, but even if it’s cloudy I can still find it difficult. So you’ll often see me wearing my green tinted sunglasses when I’m out and about, even if it’s not sunny sometimes, because the green cancels out a lot of the glare from the light spectrum, much more so than standard sunglasses. And I think they look pretty cool too.
The changing sky has been very noticeable this week – blue and bright yesterday, grey and dull today. My own eyes, my own windows on the world, also vary because of my conditions, even in the space of a single day or less. Some moments are really good and I find it really easy to do things. Sometimes it’s really uncomfortable and difficult. And most of the time I’m somewhere on the spectrum in between.
It’s one of the big misconceptions about disabilities – that they’re constant and never vary, but that’s simply not true. We all have good and bad moments. Sometimes visually impaired people find it easier to see things. Sometimes people in wheelchairs or with chronic pain disorders are able to move or walk for a few brief moments. Sometimes people with depression feel happy and relaxed. And so on. Yet at the other end of the spectrum, we can also find things difficult or impossible. It can vary week by week, day by day, and hour by hour.
Being able to do something or finding it relatively easy doesn’t mean we’re faking our conditions. We just happen to be in a good moment. And we make the most of those moments when we can. So please don’t judge based on a single observation. Unless you’ve got to know a disabled person over a period of time, you cannot fully understand how their condition affects them.
Building a new social circle when I moved to London felt very daunting, as I didn’t know anybody there, I would be homeworking during the week, and I worried that being visually impaired would limit who I could interact with.
But I was determined not be isolated and tried out as many things as I could. And thankfully it all paid off, as I’ve been able to enjoy fun events with social groups like East London Vision, South East London Vision and Thinking Bob, and hang out with amazing, inspiring individuals like Fashioneyesta. I was even invited to give a talk about building my new social life by the Nystagmus Network, which I’d never done before, but it was amazing.
So thank you so much to everyone who has welcomed me into their lives since I arrived in the city. I’ll always be extremely grateful! And I can’t wait to see what this year brings!
The Harry Potter series is very much top of my list, because they’re a lot of fun and extremely well made, and especially after all the events I’ve done in relation to them recently (the Studio Tour, filming locations walking tour, British Library exhibition and The Cursed Child play – with a touch tour and audio description for the latter). However, I also love classics like Die Hard, Independence Day, James Bond, Lord Of The Rings, Monty Python, Naked Gun, Speed and Toy Story. So I like a nice mixture of action, fantasy and comedy. Those kind of exciting escapist delights are great.
Family, friends and exploring my new home city of London are top of the list, naturally, and thus the most obvious answers. And I also love having a good laugh. Again it’s best with friends and family, but I also love watching a good sitcom or some standup comedy. I could spend forever listing the ones I like. Favourite sitcoms include Only Fools And Horses, Fawlty Towers, Dad’s Army, The Good Life, Porridge, The Big Bang Theory, Red Dwarf, Not Going Out, Bottom & The Young Ones. And favourite stand-ups include Adam Hills, Dara Ó Briain, Jimmy Carr (met him at one of his shows – great guy), Lee Evans, Michael McIntyre & Ross Noble. Having a good sense of humour is important I think.
Being a homeworker gives plenty of scope and temptation to indulge in guilty pleasures, as I can put on music, radio, audiobooks, TV, Youtube, etc in the background while I work, I can treat myself to sweet treats, and I can wear whatever I like, even my pyjamas if I so wish, without anybody noticing or commenting on it! Sure, you miss the camaraderie with your colleagues when working from home, but we keep in touch on the phone, email, social media, etc, and I visit them 2 or 3 times a year. So I’m happy.
Again, friends and family are the obvious things for that subject. But I also have a big love of music as well, especially 70s & 80s classic rock and pop, but also 60s and early 90s as well, as I grew up in the latter era, and a variety of other things too. My favourite artist is Queen, and I also like artists like AC/DC, The Who, The Rolling Stones, Lynyrd Skynyrd, Led Zeppelin, ELO, Def Leppard and Blondie, to name just a tiny few of many. I just think that music’s such a powerful tool that can stir up all sorts of emotions in your heart and fuel your imagination in all sorts of ways, helping you to either make sense of the world around you or escape it to a different place altogether, whether you’re just listening to albums you’ve bought, or if it’s part of a TV show, film or theatre play, or if you’re able to play it yourself. Life would be extremely dull without music I think, it’s always been a big part of mine for sure.
in keeping with the face painting aspect of this year’s campaign, here’s a picture of me when I was in the scouts. I used to enjoy being in the cubs and scouts, as it was something different and we had a lot of fun together. I was in the 1st Exeter group, which was at our school for the visually impaired, so we’d get together with our Scout Master Chris in the school hall when he visited for our meetings, and we’d play games and do other activities to earn our badges. And every so often we would go out camping and meet other scout groups, as you can see here with the 2 boys from the 4th Exeter group. It was getting involved with things like this that enabled me to gradually build my confidence and enjoy trying different things during my childhood.
My favourite colour is blue, as it reminds me of the outdoors, because I like going out and about, it’s a nice calm colour, and I think it suits me when I wear it. To illustrate it, this photo is another throwback, this time from the first Christmas play I was in at the school I went to for the visually impaired. It was called Tarfa & The Trolls, and for some reason I was given the lead role of Grandfather Tarfa, probably to try and help me with my low confidence and shyness levels at the time. I enjoyed our plays each year, as they were all different and were often musicals. Often I acted in them, but sometimes I played in the band. Look up the Christmas Q&A video on my Youtube channel and you can see a few clips from me in them.
I have Aniridia, which means I don’t have an iris in my eye. The iris controls the size of the pupil to regulate the amount of light coming in, so without it I can’t adjust to changes in light conditions easily. As a result, I’m very sensitive to glare and bright light, even if it’s not sunny outside, so I often wear green tinted sunglasses outdoors to reduce the glare. I also struggle to adapt in dark conditions, so have to stick to well-lit areas at night.
I also have Nystagmus, which means my eyes move and shake involuntarily. This means I can’t focus on things at a distance. so they need to be close to me or enlarged. And it can be straining on my eyes to do things like reading for too long. To help me, I enlarge things on computers and my phone and use my monocular (a small telescope) to read things at a distance. I can’t drive because of my condition either.
Having these conditions hasn’t stopped me leading a fulfilling life and achieving many things, so I’m happy as I am. I’ve published Youtube videos and blog posts about my conditions if you want to find out more.
Here’s something bright and colourful that caught my eye while I was having a long stroll in London today – an artwork called Lumen by David Ogle. I love walking around random streets in the city, because no matter where you go, you soon come across something surprising and interesting. I still have the sight to enjoy all these things, and I still have the ability to navigate my way back to familiar areas using apps on my smartphone, so I never feel lost. So, now the weather’s getting better again, I’m finally able to get outdoors for lovely long walks again, which are very welcome after sitting in front of a computer at work all week. And stumbling across delights like this make it all the more worthwhile. This city never gets boring.
London is the natural answer to that, as I’m loving it since I moved here just over a year ago. But I’m always writing about this wonderful city anyway. So instead I’m going to pick the favourite place I’ve been to on holiday.
And so far that has to be the college exchange trip I did to the USA back in May 2000. I went with my college for the visually impaired, and we spent a few days going through New York, Washington and the Blue Ridge Mountains, before spending a week with the Kentucky School For The Blind. It was an amazing fortnight.
New York was incredible for instance, and this footage is from the top of the World Trade Center. It already felt like a great privilege to experience that beautiful view at the time, but events just over a year later naturally made us feel even more fortunate to have stood up there. So it holds a very special place in my heart for that reason alone, on top of all the other great things we did.
There’s lots of footage on my Youtube channel if you look at my holiday playlist or dig back to my earlier videos. I would definitely love to go back to places like New York, Washington and Kentucky, to stay for longer and explore those areas in more depth, and delve into lots of other parts of America too for that matter, as there’s so much to discover and enjoy there. And I’m sure I will at some point.
Here’s what I had last night – fish and chips, while meeting a friend at the Doggett’s Coat & Badge pub in Blackfriars. The food was great, and we had a lovely chat over our meal, so we really enjoyed it. Fish and chips has always been one of my favourite dishes, and it brings back fond memories of the seaside town I used to live in. And where I now reside in London there’s a lovely chippy just down the road, which I’m very happy about. It’s one of those meals I could never tire of.
I think this #Hufflepuff t-shirt I got recently at the #HarryPotter studio tour goes some way to doing that. I am loyal, I’m always there for my friends if they need me and I like to help them if I can, because I value all the friends I’ve made. And my life does feel pretty magical at the moment given how my first year in London has gone. I discovered I was a Hufflepuff for sure with the help of my most Potter-obsessed friend last year, and an online quiz agreed with us. While it’s ultimately not for me to judge, I do feel the assessment is quite accurate, I’m pretty happy with it:
You’re undeniably a Hufflepuff, but you definitely have some strong Gryffindor qualities. You proudly wear your heart on your sleeve, but you lack the recklessness of a true Gryffindor, which means that you don’t act on your feelings without thinking. Your kindness and openness is what originally attracts other people to you, but they stay for your unwavering loyalty, meaning you’re constantly surrounded by a large group of friends.
Today I wanted to spare a thought for a friend of mine. These photos show me with my mate Paul, during a visit to Morocco (we were staying in Spain, along with another friend, and enjoyed a day trip to Morocco as part of our holiday). Paul also had a rare eye condition, different to mine, and it meant his sight was much worse than mine. But it never stopped him doing the things he loved, especially taekwondo (in which he earned his black belt), and other sporting activities like sailing and hiking. He also did voluntary work, travelled to America twice, and had a very active social life. He was always great to hang out with, as we had a lot in common, especially with the music and comedy we liked.
And when he developed a rare form of cancer, he was brave, strong and positive all the way through his treatment, defeating it twice. But when it came back for a third time, attacking his body more aggressively than ever, there was only so much he or anyone else could do, and it just became too much. Paul passed away at the age of just 29, and he would have turned 35 just a fortnight ago today, on 8th Feb. So I still think of him regularly and always will, I miss him a great deal. He’ll never be forgotten by all those who knew him.
And to finish off my week, I enjoyed watching a play called Winter by Jon Fosse at the Young Vic Theatre. It’s a contrasting & minimalist play revealing similarities and complexities in the very well acted characters, so it’s very interesting.
The theatre also provided a touch tour and audio description for every single performance in the run, instead of previous plays where it was only for 1 performance. And tonight’s performance was also captioned for the hard of hearing. So it’s wonderful that they’re making such an effort to make their productions accessible. The touch tour and audio description were really helpful at ensuring I understood and enjoyed everything that was happening, otherwise I’d have missed key elements of the story.
This has really helped me in quite a few theatres I’ve gone to over the past year or so since moving to London. Such accessibility enhancements in the theatre really do make a big difference to blind and visually impaired people, and there are more productions I’m keen to go to this year where that is being provided. So thank you to all the theatres who provide it!
To find out more, check out my review of the experience.
Tonight I’m just staying at home in the warm and watching TV, rather than venturing into the freezing outdoors. So instead here’s another throwback picture, from a Saturday night with friends about 10 years ago (hence the dodgy picture quality from my old Nokia phone). Thankfully I was already keeping a diary at the time, so I can recall why I was wearing that red wig with my black Iron Maiden t-shirt!
Basically, myself and another mate were visiting a friend of ours at his university, and their bar was having a game show night, with little games like Countdown, Catchphrase, Family Fortunes, The Generation Game (the conveyor belt part) and Play Your Cards Right. I do enjoy things like that, which is why I’ve enjoyed similar game nights here in London recently (I did particularly well on a Family Fortunes night last year for instance).
But there was also a Smirnoff promotion going on where you could ‘spin and win’ on a board to get certain prizes. Cheap and tacky things, obviously, but when you’re having fun and a few drinks (without going overboard of course), you don’t mind what you get. So I ended up with a flashing ice cube, a glowing straw, a furry straw – and that red wig!
So that was a particularly fun Saturday night, and it was always fun visiting my mate at his uni with stuff like that going on. I haven’t got involved in any fancy dress since moving to London so far, but anything’s possible in this crazy city, so never say never!
I fought against shyness and a lack of self confidence during my youth, and am a very different person now compared to when I first went to school 3 decades ago. So much can change over time. And these days through my blog and social media campaigns like this, I stick up for other visually impaired and disabled people like myself, so I’m helping to fight our corner in that way. But as there’s a bit of a ‘roaring’ theme to Rare Disease Day this year as well, here’s a little warrior friend I had at my nan’s house as a kid, which is still here now that we’ve inherited the place and moved in. I haven’t had the heart to get rid of him yet. His name is Leo and he’s the cuddly toy lion I had here as a child, I used to play with him a lot, he always kept me safe.
Another good excuse for a throwback photo. At one point when I was a kid, I was given some roller skates to try out, and this is a photo of me practising on one of them in our back garden to get used to it. I think I did ok on them, but it wasn’t something I did frequently or for very long. It was fun to try it though! I wonder if I’d be any good at it today.
I like this throwback image of me and two of my friends from school, where we’re posing in our uniforms with our white symbol canes in front of us. I think we look quite cool and confident, ready to conquer whatever obstacles might cross our path. Although I wasn’t always a confident child at school, especially in the earlier years when I was really shy, this photo shows that i was making a step in the right direction, in every sense. And today I still don’t let things stop me from getting out and about and enjoying my life.
Happy Rare Disease Day! My caption for this photo on Instagram is an edited version of the start of this post, so I won’t repeat it. But I hope you’ve enjoyed all of these images. And if you’ve liked them or shared them, then thank you so much.
I’ve certainly enjoyed posting it all, and hopefully I’ve demonstrated that having a rare condition and being disabled doesn’t stop me from living a fulfilling and enjoyable life.
- Aniridia Network UK Conference – Saturday 14th April. This is taking place in London, so book now if you’re interested in coming along.
- Aniridia Day – Thursday June 21st. I helped to launch the very first one last year by putting together the promo video for it, and the day was a great success overall.
- Nystagmus Awareness Day – Wednesday June 20th. It’s also known as Wobbly Wednesday, and this is a change from their previous November date.
- Nystagmus Network Open Day – Saturday 29th September. They’ll release booking information nearer the time, but you can read their report on the 2017 Open Day, at which I gave a speech!
And that’s it. Thank you so much for reading, and for any support you’re able to give to Rare Disease Day, or any organisation that deals with a rare condition of some sort. It’s very much appreciated! 🙂